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[Lynb0973]

Hello all,

Thanks for this forum.

I went into the early menopause this year at 43 after successful radiotherapy treatment for brain cancer. I resisted the idea of HRT as supplement due to having a horror of hormones after bad experiences with the Mirena coil and the Pill. The menopause clinic were insistent i at least try a couple of brands for three months. I had never had hot flushes or cold sweats. Just a complete cessation of periods. I tried Evorel Conti and stopped after a few weeks as I felt like a breeding mare or cow. The clinic persuaded me to go on utrogestan as a nightly vaginal pessary with Sandrene gel . They persuaded me to try it as I have some osteoporosis in my hips from radiotherapy and apparently it's better to use hrt than biphosponates at my age. Three months in, I am 5 pounds heavier, bleeding again for the love of God,bloated as a sow, constantly farting and getting itchy rashes that culminated in hives, not to mention feeling more lethargic than I have for months. All the reasons they give me for being on it are preventative until I reach 50. I.e. Lower risk of dementia and cardiovascular disease which are non existent in my family anyway.
Also, as a brain cancer survivor, life's too short to bear the side effects of preventative medication. I stopped two days ago and feel more relaxed and less itchy.

Am I right to follow my instincts here? I just don't want to follow the clinic's advice. My GPs are also agnostic about hrt, unlike the clinic who are very doom- laden about life without it when you'be gone through an early menopause . I trust myself enough to know I am right to have stopped, but it would be good to hear about or from anyone else in similar situations.

Thanks for reading! Hope it wasn't TLDR!

[Wrensong]

Hi Lynb & welcome to the forum.  Your post certainly wasn't TLDR btw - I think I must hold the record for those!  I'm afraid I don't have a very helpful answer for you, but I'm sure someone else will be along to give their thoughts later. 

I'm so sorry to hear of all you've been through & at such a young age.  Though my situation is very different to yours, a life-changing event steered me towards the decision to start HRT (which I had previously avoided for a decade of horrible symptoms due to family history of breast cancer), so I know how profoundly trauma can influence outlook.  It made me realise that as you say, life certainly is too short to continue to feel unwell for any length of time, so I can appreciate your feelings about the horrible effects of HRT you've experienced.  I too don't feel that good on HRT, though unlike you, better than without it, but as I have osteopenia I prefer to carry on trying to find the right regime, as I'm hoping this will enable me to avoid future treatment for osteoporosis. 

The HRT as prevention issue is a difficult one if the hormones make you feel worse, but as you have taken the decision to stop, this will give you breathing space to step back & perhaps when you are ready, think again later about whether you might want to try a different HRT combination to safeguard your bones. 

You have been through so much recently, I would be kind to yourself above all, try to get as much rest as you can, spend your free time doing whatever feels good to you & let medical issues fade into the background as much as possible for a while to give yourself a break.   This feels very inadequate advice, but there are so many helpful ladies on the forum with so much experience, I'm sure you will get more help & support before long.  I hope things go well for you.

[CaroleM]

Hello Lynb,

Welcome.

You are one amazing, strong and brave lady. You have undergone so much treatment and only you really know how your body feels, so yes, following your instincts could be your path. Whatever you choose to do, please know that you will always have the support and encouragement of everyone here.

 
Brighteyes

[Kathleen]

Hello Lynb and welcome to the forum.

There are many experienced and knowledgeable ladies here so you have come to the right place for advice.

Wishing you well and keep posting.

K.

[CLKD]

After radiation treatment as a pre-caution following a lump removal from the breast, I was prescribed Tamoxifen which almost killed me.  I stopped after 3-4 months.  I hadn't felt physically ill during diagnosis and treatment so I didn't see why I should after!  A friend died of the drug as it caused cancer in the womb .......

Go with your gut instinct.  That bus might be along tomorrow ;-) so if it is making you feel poorly, take a break!  Maybe keep a mood/food/symptom diary to chart where you are and how you feel.

 

[Hurdity]

Hi Lynb0973

  from me too.

TLDR  ?? - That's a new one on me - and two of you understand it!!

So sorry to hear about your brain cancer and what to do depends very much on the success of your treatment and the prognosis you have been given.

I am neither a lady nor very knowledgeable but if your treatment has been completely successful and you are to all intents and purposes cured - then if you already have some osteoporosis, I'm with Hasty on this one - I would try to find an HRT that does not give you these side effects so that you can enjoy the best quality of life that you can - for hopefully many years.

It sounds like you could have been sensitive to the progesterone - and not many women like to take utrogestan every day - and especially not vaginally for obvious reasons.  It has a sedative effect so taking it continuously can exacerbate this. The conti utro  might account for the bloating and weight gain. Also there have been other women who have reported itchiness and hives with some progestogen treatments.

If I were you I would think about returning to a cycle if you can bear to bleed again - as this means you would only take progesterone for part of the month.  The bleed would be predictable once your body had settled into the regime. I wonder if you would react less to taking the utrogestan for say 11-12 days per month? Hopefully the menopause clinic will sanction this too - so that you could take less than the licensed dose under supervision - say vaginal Utro 100 mg for 10 days per month. Docs would need to monitor you re the womb lining every so often but in your position - this might be the answer. The only other progestogen that can be used separately is Provera which some women tolerate well. What dose of Sandrena are you using?

Hurdity x

[Lynb0973]

Hi Wrensong and thank you for the welcome. You're all such a lovely bunch of ladies...

Your advice is fantastic and wise and informed by how caring you are.

Sometimes stopping and waiting is the best thing.

Two days off it and the flatulence has gone! Yaysers!

Take care x

Hi Lynb & welcome to the forum.  Your post certainly wasn't TLDR btw - I think I must hold the record for those!  I'm afraid I don't have a very helpful answer for you, but I'm sure someone else will be along to give their thoughts later. 

I'm so sorry to hear of all you've been through & at such a young age.  Though my situation is very different to yours, a life-changing event steered me towards the decision to start HRT (which I had previously avoided for a decade of horrible symptoms due to family history of breast cancer), so I know how profoundly trauma can influence outlook.  It made me realise that as you say, life certainly is too short to continue to feel unwell for any length of time, so I can appreciate your feelings about the horrible effects of HRT you've experienced.  I too don't feel that good on HRT, though unlike you, better than without it, but as I have osteopenia I prefer to carry on trying to find the right regime, as I'm hoping this will enable me to avoid future treatment for osteoporosis. 

The HRT as prevention issue is a difficult one if the hormones make you feel worse, but as you have taken the decision to stop, this will give you breathing space to step back & perhaps when you are ready, think again later about whether you might want to try a different HRT combination to safeguard your bones. 

You have been through so much recently, I would be kind to yourself above all, try to get as much rest as you can, spend your free time doing whatever feels good to you & let medical issues fade into the background as much as possible for a while to give yourself a break.   This feels very inadequate advice, but there are so many helpful ladies on the forum with so much experience, I'm sure you will get more help & support before long.  I hope things go well for you.

[Lynb0973]

Bright eyes,

Those are such lovely things to say..and your support is really reassuring.

You're all such a great group.

I think I will give it a break and wait for the clinic to call me back on Tuesday or Wednesday when they're around.

Thanks for your welcome and wise words x

quote author=Brighteyes link=topic=36957.msg591986#msg591986 date=1502630193]
Hello Lynb,

Welcome.

You are one amazing, strong and brave lady. You have undergone so much treatment and only you really know how your body feels, so yes, following your instincts could be your path. Whatever you choose to do, please know that you will always have the support and encouragement of everyone here.

 
Brighteyes
[/quote]

[Lynb0973]

Thank you, Kathleen; there certainly appear to be many. Wishing you well, too.

Hello Lynb and welcome to the forum.

There are many experienced and knowledgeable ladies here so you have come to the right place for advice.

Wishing you well and keep posting.

K.

[Lynb0973]

Thanks, Hasty, I'll take on board and very much appreciate your experience and your advice. For the time being I'd rather just use the calcium and d3 supplements I've been prescribed.

I think I'll wait for a while and get rescanned and tested.

Thanks x

quote author=Hasty link=topic=36957.msg592002#msg592002 date=1502645968]

They persuaded me to try it as I have some osteoporosis in my hips from radiotherapy and apparently it's better to use hrt than biphosponates at my age.

Hi Lynb0973 - Welcome to MM   

I have osteoporosis I use Evorel Conti and have tried bisphosnonates - both oral and infusion. Given a choice between HRT and bisphosnonates HRT wins every time. I've used bisphononates and didn't get on very well with them at all. If HRT is enough to sort your osteoporosis out I would use it without question.
[/quote]

[Lynb0973]

I'm there with you. Our inner wisdom speaks to us and I've decided to heed it.

Thanks for your morale- boosting!

After radiation treatment as a pre-caution following a lump removal from the breast, I was prescribed Tamoxifen which almost killed me.  I stopped after 3-4 months.  I hadn't felt physically ill during diagnosis and treatment so I didn't see why I should after!  A friend died of the drug as it caused cancer in the womb .......

Go with your gut instinct.  That bus might be along tomorrow ;-) so if it is making you feel poorly, take a break!  Maybe keep a mood/food/symptom diary to chart where you are and how you feel.

 

[Lynb0973]

Hi Hurdity

Thanks for your welcome and advice. You're right, but I think I'd rather go with the flow ( is that a pun??)right now and stay off it.

Luckily the tumour has gone, after radio and chemo last year. I'm on 0.5 of Sandrene gel.

Thanks for being there and blessings your way x



uote author=Hurdity link=topic=36957.msg592032#msg592032 date=1502653488]
Hi Lynb0973

  from me too.

TLDR  ?? - That's a new one on me - and two of you understand it!!

So sorry to hear about your brain cancer and what to do depends very much on the success of your treatment and the prognosis you have been given.

I am neither a lady nor very knowledgeable but if your treatment has been completely successful and you are to all intents and purposes cured - then if you already have some osteoporosis, I'm with Hasty on this one - I would try to find an HRT that does not give you these side effects so that you can enjoy the best quality of life that you can - for hopefully many years.

It sounds like you could have been sensitive to the progesterone - and not many women like to take utrogestan every day - and especially not vaginally for obvious reasons.  It has a sedative effect so taking it continuously can exacerbate this. The conti utro  might account for the bloating and weight gain. Also there have been other women who have reported itchiness and hives with some progestogen treatments.

If I were you I would think about returning to a cycle if you can bear to bleed again - as this means you would only take progesterone for part of the month.  The bleed would be predictable once your body had settled into the regime. I wonder if you would react less to taking the utrogestan for say 11-12 days per month? Hopefully the menopause clinic will sanction this too - so that you could take less than the licensed dose under supervision - say vaginal Utro 100 mg for 10 days per month. Docs would need to monitor you re the womb lining every so often but in your position - this might be the answer. The only other progestogen that can be used separately is Provera which some women tolerate well. What dose of Sandrena are you using?

Hurdity x
[/quote]

[Wrensong]

Hi Lynb - you're most welcome.  Glad you are already feeing a little better.  I think many of us have experienced how bad the wrong HRT regime can make someone feel - I'm currently on my 4th trial & some of the previous have not been pretty!  I don't want to speak for anyone else, but reading through some of the other posters' comments, I think we also hope that there might be a combination out there that will make you feel better and also safeguard your bones for the future.  You're naturally relieved at having taken the decision to step back for now & no-one would want to push you in a direction you feel is wrong for you, but we just want you to feel that there are further options you might explore if & when you are ready.  Look after yourself - I feel the right course of action (whether that be staying off HRT or trying another combination) will become clear once you've had time to step back a little from all that's happened & please do post again if there's anything we might be able to help with.

Hurdity - TLDR - can't believe there's anything I know that you didn't  !  Actually must confess - had to ask OH what it meant!  As we are both far from hip I hope he got it right: Too Long Didn't Read!  As said earlier, perfectly describes anyone's dilemma when faced with most of my posts!

[CLKD]

        I am neither a lady. ..........

glad you feel better Lynb!  Browse round.  Make notes.  Quality of Life is my mantra so if medication makes me feel worse, then I stop taking it.  Surgery was in 199-something or other and I'm still here >wave<

[Hurdity]

CLKD - I am  a woman - never a lady!

Wrensong - oh dear - I hope I don't come across like that  . I only know about a limited range of stuff and only post on what I know about and can help with - I stay away from other threads that other members are far better placed than I to comment - I'm not one to post on every thread..... TLDR - well I probably am guilty of some of that - but I think we have to remember that to the OP - nothing is ever too long (within reason....!!!) and this is who we address our posts to - mostly they are very grateful!!  Some of us are a bit wordier than others and there isn't time to edit length - just the odd word here and there. Others may think - oh no not again - but tough eh?! They can ignore it!!!

Lynb0973 - I do agree with Wrensong's post - so when you've had time to think - as she says - do ask again if you want to and hopefully we can help

Hurdity x